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Ensuring Patient Concerns Don’t Limit Health Data Exchange

A new op-ed by former National Coordinator David Blumenthal, MD, MPP, addresses the potential for digital health information exchange to dramatically change healthcare so long as providers address patient health data security and privacy concerns.

“Every technological advance brings both benefits and risks, many of which are unanticipated,” Blumenthal writes, “This is especially true of digitizing health information—a process that is inevitable and accelerating.”

Patients withholding data could soon affect the stream of information moving between EHR systems, ultimately detracting from quality patient care. Data security problems are not uncommon, and stakeholders are intent on equipping healthcare organizations with the knowledge, resources, and training necessary to properly prevent and mitigate data security issues before they occur.

However, concerned patients could lose confidence in trusting the healthcare industry with their information, leading to another problem with the potential to severely hinder health data exchange.

“The worry is that patients may be reluctant to share sensitive information with clinicians in the digital age for fear that their data will be insecure, which is not unrealistic, given almost daily reports of hacking into supposedly protected databases,” Blumenthal states.

The benefits of EHR systems to patient care are well-documented and their reach could extend further through new health data exchange innovations. Patients withholding data, however, could potentially stagnate progress despite recent technological advancements. The more patients choose to do so, the less informed and appropriate the care they receive.

Blumenthal asserts the first step to mitigating patient data withholding is to assess how often patients are opting to keep their information out of physician EHR systems.

“Research is required to document the nature and extent of patients’ failure to share health information: to understand who withholds data, what they withhold, and how often they do so. The epidemiology of the phenomenon may suggest important ways to minimize it,” he writes.

Considering patient data withholding would primarily stem from the fear of leaving important information vulnerable, Blumenthal suggests assuaging patient’s concerns about the safety of their information through guaranteeing more secure EHR systems.

“Clinicians, health care organizations, and vendors can and should reduce the frequency of patient data withholding,” Blumenthal maintains. “First, they should create the most secure possible environment for the data health professionals collect. In fact, the most common reason for highly publicized data breaches in health care is not malicious hacking, but health care providers’ bad data hygiene. Many health professionals and organizations do not observe the most basic security precautions, such as requiring and training their employees to observe basic security procedures.”

Along with improving health data security, ensuring patients have an understanding of how their information is used could allow for more informed consent and more patient involvement in care.

Finally, Blumenthal views patient-facing apps and technologies as a way to empower patients to assert more control over which information is shared. Feeling in control of their information could put hesitant patients at ease regarding health data exchange.

“If patient portals and other devices through which patients access their health information can offer them choices on what they are willing to share, and with whom, they may feel more confident in the integrity of the data systems that store their health information,” he writes.